Thursday, April 17, 2008

Hi and Thanks for Reading Jessie's story. I imagine that today, because of the Report in today's paper, that many in our community will be reading this for the first time. I apologize if the newspaper delivered this message to you for the first time as opposed to a personal message from us. I thank The Community News http://www.community-news.com/ for delivering our message to those who we care about, but have missed.

Below is a quick recap of Jessie's battle with Rasmussen's Encephalitis, her prognosis, and treatment to come. If you want to read the whole story from beginning to end, it is best to start at the very bottom of this blog and read up. It will take your through her first seizure this summer to the present.

On February 20, 2008, The Neurology Department at Cook Children’s Hospital in Fort Worth, Texas held a special conference to discuss Jessie Hall’s case. She had been having unstoppable seizures, abnormal brain activity, and a lesion all focused on only one side of her brain. Her arm, hand, and eyes twitched continuously with a continuous seizure that no medicines could stop. Under the care of Neurologists Dr. Monica Chacon and Dr. Saleem Malik, they presented the case to the entire neurology and neurosurgery staff at Cooks, and after 7 baffling and confusing months, they finally had a diagnosis. A diagnosis that none of them had made before, and one that none of them wanted to make again.

Jessie, at 5 years of age, was diagnosed with Rasmussen’s Encephalitis. Rasmussen’s Encephalitis is an extremely rare and cruel brain disease that almost exclusively attacks little kids; usually kids like Jessie, with no previous health problems. A happy, healthy, outgoing little girl that liked to sing, dance, paint, play dress-up, read, and go to Kindergarten at Stuard Elementary in Aledo, was now fighting for her life. In fact, other than the constant seizures in her hand, arm, and eyes, you might not know that this disease is relentlessly attacking the right half of her brain.

There are no medicines or treatments that can stop Jessie’s seizures, and if they are not stopped, the disease will progress with catastrophic results. The only treatment for this disease is a radical brain surgery called a hemispherectomy. They will have to remove the entire right half of Jessie’s brain. Jessie will fly across the nation to Johns Hopkins Hospital in Baltimore Maryland to have this procedure done as soon as it can be scheduled. Under the direction of Dr. Eileen Vining, Neurologist and her assistant Diana Pillas and under the surgical direction of Dr. Ben Carson (Director of Pediatric Neurosurgery), and with the help of hundreds of other doctors and staff, Jessie will have half of her brain removed.

Agreeing to this surgery is the hardest thing that any parent will ever make. You see your daughter getting on a bus to go to school or playing on a playground, as you set up a surgery that sounds like something our of a Frankenstein movie. No parent should have to make that decision, and ultimately, it is an “elective” surgery as the hospitals would say. In other words, the parents make the decision, not the doctors. I guess that it is a liability thing. Luckily, our insurance will cover the proceedure.

The amazing thing about this surgery, is that Jessie has an incredible chance of recovering and going on to lead a normal life. Sounds impossible doesn’t it. It’s not, however, because of a thing called “Elasticity” or "Placticity", and kids have lots of it in their brain. That means that their brains are so young and pliable, that one side can actually take over some of the function that the other side was doing. A surgery like this would probably kill an adult, but kids have the chance to recover amazingly well. There is not a lot of research on it however, because not many of these surgeries get performed each year.

Jessie’s chances of a miraculous recovery are even better, because she still is in such good shape. She still walks without problems and has lost only minor cognitive skills. Many children who undergo this surgery have much more severe mental and physical problems, so tracking post-surgery progress is difficult. Jessie has a very good chance to walk after this surgery. She will most likely go back to Kindergarten next fall, and chances are good, that she will graduate from Aledo High School in 12 years and go to college.

So this is not a story of tragedy, but a story of hope and the miracles of God and medical science. This is the story of a brave little girl who may just defeat a disease that is threatening to take her life.

Before surgery, however, the Hall family plans to celebrate life and enjoy things as much as possible with their four kids. Matt (9), Jake and Josh (8), and Jessie (6). The Make-A-Wish foundation along with the Give Kids the World organization have graciously and compassionately planned a special week for Jessie and her family starting on April 7th. They will stay in the Give Kids the World Village in Kissame Florida at night, and during the day enjoy the many attractions that the Orlando area has to offer. “We are so blessed to have a wonderful God, community, school system, employers, doctors, family, and friends to help us through this difficult time.”

Our love to all of you in our Church, School, Neighborhood, Community, Our Family and Friends and all the people who care about Jessie.The Halls (Cris, Kristi, Matt, Jake, Josh, Jessie)

2 comments:

Anonymous
said...

Cris,

Do not let these ravanous vicious wolves tear your beautiful kid apart. If you are giving her DIET COLAS STOP STOP STOP! Get her some Methyl Sulfonyl Methane (MSM) all natural substance no longer found in our food and she should improve with that. At the very least give her 3 - 6 months before that vicious surgery. Doctors are stupid. Our diets are bunk and there are no minerals or anything beneficial in twinkies. Please do something for your daughter NOW! No diet colas cause they contain NutraSweet or "the blue packet" of sweetner which IS A NEURO-TOXIN! UNDERSTAND WHAT I AM TELLING YOU. THEY WILL KILL YOUR LITTLE GIRL OR MAKE HER A VEGETABLE. catrin7@gmail.com

My sister seen your story on Headline News and called me. Our daughter had a left hemispherectomy in October, 07. She was three years old and is now doing great. We will keep you in our heart and prayers. The surgery was our only option and we are so glad that we had it performed. Our little girl has had one seiuzre since surgery! BEST OF LUCK!!!!!

About Me

Jessie is 8 years-old and in 2nd Grade. She has 3 brothers, Matt(12), Jake(10) and Josh(10). She loves people, and never met a stranger. She loves to laugh and sing and play. Jessie was diagnosed with Rasmussen's Encephalitis(RE), which is a rare brain disease that usually attacks healthy children about her age. The only known treatment for this cruel disease is a hemispherectomy (surgical removal of one-half of the brain)
This is an account of Jessie's confrontation with RE and her families attempts to navigate through a new world to bring her the best care possible. Surgery was on June 11, 2008.
This Blog is an attempt to help people undertand this disease and surgery, and to help others with kids going through it to find comfort and resource from someone who has been there before.
Read from bottom, up. It will be updated continuously through Jessie's Miraculous Recovery.
**To add Comments, just click "Comments".Or, email Jessie at Jessie@Hallzoo.com.